NEWS & UPDATES
COMMENTS FOR THE PRESIDENTIAL ADVISORY COUNCIL ON HIV/AIDS
Mark Misrok, Executive Director, National Working Positive Coalition
March 9, 2021
I’m Mark Misrok, a person living and aging with HIV and Executive Director for the National Working Positive Coalition. Our work is focused, in alignment with HIV care and prevention, to strengthen responses to the employment needs of people living with or at greater vulnerability to HIV.
Our current HIV services infrastructure is weakened by a profound lack of capacity to respond to the employment needs of people living with or at greater vulnerability to HIV across most of the country. Few of the individuals we serve have the opportunity to understand what employment options may be possible for them to achieve optimal physical, mental, and economic health and well-being, maintaining or improving their access to health care, medications, housing and/or economic security. Few HIV care and prevention providers are equipped with this knowledge to accurately share it with those that they serve. For decades now, many thousands of us, people living with HIV in the U.S., have advanced through our working years into impoverished older age without, or with only the most minimal and marginal, participation in employment and vocational development. The urgency of our response to employment needs has only been heightened by the impacts of the COVID-19 pandemic.
The exclusion of employment services as an allowable supportive service in the Ryan White HIV/AIDS Program helps institutionalize minimal attention, and limited to no response to the employment needs of people living with HIV by the providers to whom we are most well-connected to and trust, those who otherwise best understand and care about us. Little to no training is offered through the AETCs on how to understand and respond to employment needs, either directly, or through informed linkage and referral, and the few HIV-focused employment programs developed by HIV service providers with other sources of funding, too frequently struggle or collapse, regardless of their success. It would seem that we don’t value economic and employment opportunity for the communities we serve, we don’t see connections between addressing employment needs to racial justice and to health equity, or we believe that there are no models for how employment needs can be addressed within our own service delivery infrastructure.
Employment services help to level the playing field for job seekers who do not and have not had equal opportunities. People living with or at greater vulnerability to HIV deserve and need non-stigmatizing, non-discriminatory, affirming, health-promoting employment services, located in the programs where we access care and prevention services, to address social determinants of health and for a more just quality of life and well-being. Thank you.
VANESSA JOHNSON'S RIBBON STATEMENT
Valuing the Meaningful Engagement of Subject Matter Experts with Lived and Earned Experiences - March 8-9, 2021 PACHA Meeting
My name is Vanessa Johnson, and I serve as a co-Executive Director for Ribbon. Ribbon is a minority, women-led entrepreneurial nonprofit organization located in Largo, Maryland.
The statement I am about to read, Valuing the Meaningful Engagement of Subject Matter Experts with Lived and Earned Experiences, is a small but meaningful action that the federal government can take to implement the HIV National Strategic Plan.
After nearly 40 years of the HIV epidemic, governments and organizations at all levels are still asking people living with HIV to come to the table to help them shape funded programs and services on a volunteer basis or for nominal compensation. Now, people living with HIV are once again being asked to “meaningfully engage” in support of the nation’s plan to end HIV.
In this context, Ribbon wants to discuss the undervaluing of women living with HIV (WLWH) who provide subject matter expertise. As subject matter experts, this group should be afforded the same consideration as other expert professionals in the form of fair compensation.
Organizations seeking the input of WLWH should fairly compensate us for the lived and earned experiences, knowledge, and expertise that we bring to the table. Many women are heads of household and are responsible for covering expenses that enable them to care for themselves and their loved ones. Thus, women must receive compensation at a rate higher than a thank you, gift card, or stipend. At the very least, governmental entities and organizations must compensate women at a rate that truly reflects their value and ability so we can continue to do this type of work.
Unfortunately, grant-funded programs requiring women's engagement often do not include us as contractors or consultants in their budgets. Instead, we are relegated to the budget lines for stipends, gift cards, or refreshments. These budgets must reflect the time, effort, and value of ALL resources needed to create successful programs.
The federal government, beginning with itself, must require other governmental entities and organizations to compensate women for their time and effort fairly. This recommendation can be viewed as one small step towards addressing the income inequities that make it difficult for the community of WLWH to thrive beyond the goal of viral suppression.
In closing, Ribbon would be glad to assist you in developing fair compensation policies and program guidelines that serve a variety of women you seek to engage.
Thank you.
In addition to working at Ribbon, Vanessa is also on the Board of Directors for the National Working Positive Coalition (NWPC).
NEW YORK STATE RESOURCE LIST
NWPC has developed a key resource list for New York State as a companion to our Employment Needs Survey of People Living with HIV in New York State: Employment, Emotional Support, and Mental Health: Resources for Assistance and Information in New York State
Residents of New York State living with HIV who are interested in participating in the Employment Needs Survey can contact:
Positively Aging and Work presentation
The National Working Positive Coalition is proud to partner with The Reunion Project (TRP) and Test Positive Aware Network (TPAN) on their Positively Aging initiative, through a grant from Gilead. This initiative provided the opportunity for NWPC to present on employment topics in the NOLA Regional Virtual Town Hall on July 21, 2020. As COVID-19 required changing the planned two-day in-person convening in New Orleans into a virtual 2-hour online event, it allowed for including a regional focus including Alabama, Mississippi, Louisiana and Texas. Vanessa Johnson and Mark Misrok provided this videotaped session, followed by a live breakout group discussion, and the development and sharing of this Regional Employment Services and Resources Key Listings Guide.
NEWS & UPDATES
The Well Project's Fact Sheet; "Moving Forward, Living with HIV: Considering Education or Training"
Positively Aware: "Positively Aging: Bringing Work Back to Life"
https://www.positivelyaware.com/articles/positively-aging-bringing-work-back-life
POZ Magazine: "Employment Needs"
https://www.poz.com/article/employment-needs-mark-misrok
New York State Ending the Epidemic: Expanding Employment Opportunities for People Living with HIV - Steering Committee Report and Implementation Strategies
Amida Care: "Hire Me!: End AIDS with Jobs"